Hi everyone. I'm after a bit of advice. I'm looking for something I can take for RLS a couple of times a week that it not an opiate. I already take codeine but can't take it every day due to tolerance build up-it just doesn't work when I do that.I don't want to take a dopamine agonist for fear of augmentation. Has anyone any suggestions? x
A second medication: Hi everyone. I'm... - Restless Legs Syn...
A second medication
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Jumpey
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You've pretty well ruled out everything.!
If the rls is intermittent, then I would be looking at triggers- food or medications.
Does Paracetamol help?
Otherwise you are left with iron supplementation, magnesium rubs and any of the esoteric solutions that regularly come up here - although I hesitate to suggest the bar of soap behind the ear one- though Raffs might!😈
Keeping a diary of intakes might show up what's triggering your episodes.
Good luck.
in reply to Madlegs1
Expanding upon what Madlegs says:
You might also want to experiment with the amount of time before bed you need to stay away from your "trigger" foods and drinks. I, for one, cannot live without certain comfort drinks like coke, black tea with sugar, etc., but if I know that "ok, I can have these things up until .... time" I can do that.
Jumpey in reply to
Thank you Jess for your response. I am not aware of any food triggers. I don't have any of the things you mention.I wish I could pinpoint something I should avoid-I would happily do so to avoid this trial of not being able to sleep.x
I take Temazepam to help me sleep
My triggers are sugars
Nothing me helps me with the pain except getting out and doin and doing something I enjoy despite the pain.
Hi Madlegs. The RLS isn't intermitent-it's daily. I have never been able to ascertain any food triggers-I am vegetarian and cook food from scratch, generally eating healthily. I don't take any meds that are known to trigger RLS. I already supplement with iron and magnesium. Have tried the soap in desperation would you believe!
Paracetamol is of no help. The reason I won't try DA's is because of the horrible stories I have read on here of augmentation and then withdrawal. And I already take an opiate-codeine.
Thanks so much for your reply.
Hi Jumpey
I do get intermittent Periodic Leg Movements (PLMD) which although is different to RLS - some RLS sufferers also have. A DA such as pramipexole (I use the Sifrol brand name) also is excellent at controlling PLMD besides RLS
I've taken 0.125 mg pramipexole intermittently for about 1 month with excellent effect.
My point is that the DA can be used at its lowest therapeutic level of 0.125 mg/night on an "As Needed Basis" This point has been put to Dr Mark J. Buchfuhrer by myself and possibly Madlegs1 via email. His view was that if the RLS isn't too severe - then the pramipexole can be used 'as needed'
I'll add from my extensive reading of the literature that the low dose DA drugs are unlikely to cause augmentation. Augmentation is more often see with larger doses usually over a long time frame. It's also my understanding that even should the augmentation occur...by ceasing the DA intake - RLS usually returns to pre-drug condition.
Hope this information gives you some confidence to at least give a DA a trial to see if you can get some relief ~ as you seem to be all out of other options.
You may wish to send an email to Dr Mark J. Buchfuhrer at somno@verizon.net
Cheers
Doc
Although last week, Dr. Buchfuhrer said that they have removed "as needed' on any dopamine med from the official treatment algorithm
I will contact Dr Buchfuher again -as that advice was only given to me last week.
My understanding of pharmocokinetics of drugs in general is that the reason for a daily dose is to achieve a stable plasma concentration. This will depend on the particular drug and if any active metabolites are involved. For pramipexole:
Pramipexole displays linear pharmacokinetics over the clinical dosage range. Its terminal half-life is about 8 hours in young healthy volunteers and about 12 hours in elderly volunteers (see CLINICAL PHARMACOLOGY, Pharmacokinetics in Special Populations). Steady-state concentrations are achieved within 2 days of dosing.
Absorption
Pramipexole is rapidly absorbed, reaching peak concentrations in approximately 2 hours. The absolute bioavailability of pramipexole is greater than 90%, indicating that it is well absorbed and undergoes little presystemic metabolism. Food does not affect the extent of pramipexole absorption, although the time of maximum plasma concentration (Tmax) is increased by about 1 hour when the drug is taken with a meal.
Distribution
Pramipexole is extensively distributed, having a volume of distribution of about 500 L (coefficient of variation [CV]=20%). It is about 15% bound to plasma proteins. Pramipexole distributes into red blood cells as indicated by an erythrocyte-to-plasma ratio of approximately 2.
Metabolism and Elimination
The terminal half-life of pramipexole is about 8 hours in healthy volunteers and 12 hours in elderly volunteers.
Urinary excretion is the major route of pramipexole elimination, with 90% of a pramipexole dose recovered in urine, almost all as unchanged drug. Nonrenal routes may contribute to a small extent to pramipexole elimination, although no metabolites have been identified in plasma or urine. The renal clearance of pramipexole is approximately 400 mL/min (CV=25%), approximately three times higher than the glomerular filtration rate. Thus, pramipexole is secreted by the renal tubules, probably by the organic cation transport system.
Madlegs nailed it on the diary gave me same advice!
Interesting. what were your triggers?x
If it's legal where you live kratom works great for me. DA's were a nightmare and with the opioid crisis I don't think my Dr will prescribe them so I chose a natural substance.
Thanks terrilynn and involuntarydancer. Ihave been using CBD oil capsules for some time now. Theseare good for relaxation from the agitation caused by this condition. However it does not stop the RLS symptoms. Dose Kratom actually stop the symptoms? It isn't legal as far as Iknow in the UK.
I live in the US where kratom is legal but I know people in the UK do use it. It totally stops my rls better than any prescription drug I have been given. In a perfect world I would rotate between kratom and a mild opiate like codeine so not to develop a tolerance to anything. With the opiate crisis in the US unless you have cancer or a broken bone pain meds are out of the question. All the other drugs used for rls have side effects I'm not willing to deal with. I do use kratom responsibly only when needed as to not develop a tolerance. So far I haven't had to increase my dose or had any side effects.
Kratom is only legal in SOME states in the US, FYI.
Cannot get it in the UK. it is illegal.
I was going to suggest Kratom which is good as an 'as-and-when' option. It works even when it is not legal actually 
For those of us who live in zones where it is not legal it can be ordered from websites based in Amsterdam.
Other than Kratom there really are very few options. You could try an anti convulsant (pregabalin or gabapentin) but they do need to be taken every day.
Your rls sounds bad enough to justify a daily medication though ....
Hi involuntarydancer, my first online reply. I use pregabalin every day for neuropathic pain related to my MS. I still suffer RLS and can spend some very uncomfortable nights trying to relax my muscles and get to sleep. I can get very upset with frustration, pain and a general agonizing of "Why me?"
Sounds to me like you could do with a daily medication . Don't rule out DAs as you may get 10 to 15 years relief from them and who knows what other meds may be available to you then. I had 15 years of relief with Ropinerol . Now we know the dangers of Augmentation and what signs to look out for you can minimise the risk, if the DA stops being effective never increase the amount get off it altogether. Use the lowest dose that gives relief and never go over the new recommended maximum doses. 1mg in the case of Ropinerol. Gabapentin and Lyrica are also useful to many including me and would work well with the codine you are already taking
. Kratom that others have suggested should help too. If you are in the UK the Kratom will probably work out more expensive as the prescription charges in the UK are quite low or free if you are eligible. Not sure what people pay for meds in other countries but have heard some people on here say that they can not afford to take the meds they need because of the high monthly costs, some saying over a $200
I wish you luck
Also good practise to rotate DA meds - or any others.
Can you say a bit more about rotation Madlegs? Do you mean using 2 different DA's or a DA with another drug? That's why i was looking for something to use as well as codeine. My intention is to use codeine for a period until it stops working (which it does regularly) and then use another drug if possible. And then return back to codeine which starts to work again after a holiday. I had no idea that DA's could be used on an as needed basis.x
Rotating would be any way that prevents augmentation.
Some people take one for a while and then change to another- days/weeks.
DAs are ok to do rotation.
Not the alpha 2 ligands- Pregabalin or Gabapentin- because they don't work immediately - take up to 3 weeks to become effective.
Opiates may be rotated , but not as effectively as they work in similar ways. But can be stopped and started- maybe with CBD/ Kratom or other substance.
Prami is Mirapex/ Sifrol in different countries.
I live in US and the tramadol I take even with insurance was costing 300dollars every 30days because the federal drug administration had not approved it for RLS I drew my neurologists attention to this and she very kindly wrote it up for back problems which now costs7dollars every 30 days.It boggles the mind the intricacies of the thought processes of those in charge.S
Surely if you took a dopamine agonist only a couple of tmies a week, there would never be an issue of augmentation? I would assume you only eventually run into problems if it is daily? Bit like the opiates - ok if not every day. What does everyone think?
in reply to EveW
I use the neupro patch (a DA) maybe 4-5 times/week. Even with that I end up taking it off before the 24-hour mark is up (it's a 24-hour medicine).
Although I don't use it everyday, I am still dealing with augmentation. From what I've learned (and please correct me if I'm wrong), you can recognize augmentation by having the dose work well for awhile, but then it becomes ineffective, and therefore you ask for a higher dosage. This is what I've been doing. Now the 4mg isn't working as well as it used to.
So, my answer to your question is yes, augmentation can still occur. This is obviously just my experience, though; it might be different for others.
Take care,
EveW in reply to
Thankyou for your reply - as always, everyone's insights and experiences are invaluable.
Jumpey in reply to
Thanks Jess. Again I hadn't realised you didn't need to take DA's every day. That's helpful. It may be that what you are experiencing is tolerance. This is what i am having to deal with in terms of codeine. It works for a while and then stops. I have a drug holiday from it. Then it starts working again. Thta's why i want a second drug to rotate with it.One that i don't need to take every day.x
in reply to Jumpey
Yeah, I'm in the same boat. I have a lot to go over with my neurologist when I see him next Tuesday.
Regarding DAs: you probably should take them everyday for best results. I just don't because I am frustrated with them in so many ways. Too long of a story to reiterate here.
Answering the question of taking DAs intermittently yep- that was discussed here recently and it can be effective.
I get the impression that the OP does not have intermittent rls but rather just doesn't want to take any continuous medication.
in reply to Madlegs1
Who's the OP?
Madlegs1 in reply to
Original / Opening Poster.
in reply to Madlegs1
Oh, okay. Thanks.
How ya doing, BTW?
Madlegs1 in reply to
Thanks- all going well- ferritin down to 600 from 1400 a few months ago (phlebotomy )
And issues with oxy not lasting- but Paracetamol at 3am gets me through.
Mind yourself.
Wow how did your ferritin get so high? and well done for getting it down.x
Thanks Madlegs that's extremely helpful. I am the same. i have daily RLS but don't want to take drugs every day. Do you know whether Ropinerol can be taken on an intermittent basis. That is the usual drug prescribed here in the UK.x
I use a home made magnesium oil there or four times a week, possibly placebo effect, but to be honest it's working so far so I don't care if it is!
Jumpey, I take pramipexole on an intermittent basis. It works for me immediately, no accumulation in the system is required.
Thanks EweW. That's so helpful to know. Are you in the UK? I'm not sure if this is licensed for use for RLS here.x
Yes I am in the Uk, so it is called something else in the States - I used to take it every day, then had to start uppping the dose so stopped. I now have a RelaxisPad which does the job most of the time, but if I go away for a night or two , rather than taking the RPad, I just take the pramipexole, and it works a treat. So weeks will go by without me taking it, then when I do, the original dose still works.
Try gabapentin
Jumpy ,
This link gives you all the information you will need on augmentation and how to minimise the risk . It is about an hour long but Dr Buchfuhrer does talk about the intermittent use of DAs and also DA drug holidays just like Madlegs 1 has advised you. That information is toward the end of the webinar but I would strongly advise you to watch and listen to all of it . He explains the mechanisms of augmentation, all the old recommended maximum doses against the new ones. It is actually very interesting and knowledge is power. I always want to make a well informed choice about any medication I take so will research it thoroughly and weigh up the pros and cons . Even now after augmenting on Ropinereol I would still make the same decision to take it If I were to go back in time. I had 15 good years on it and may have had longer if I had known about the 'drug time out' advice that is talked about in the youtube clip and that madlegs1 mentioned
Cut and pasted from a previous post of mine:
I'm getting 90% relief using powdered kratom leaf. It's available on the internet at eleven cents per gram when bought in bulk ($110 per kilogram). My favorite strain is "Red Borneo", although I rotate through 7 different strains, hoping that that will help to avoid tolerance building up. I'm using 8 grams per dose, two or three times per day. I mix each dose in a blender with 8 ounces of milk and a packet of Carnation "Breakfast Essentials" (aka "Instant Breakfast") which is also a powder. This concoction is needed (for me) to make palatable the kratom which is about as dry as chalk powder. Also I mix into each dose, one capsule (25mg) of iron bisglycinate ("comfort iron"), although many of the good people here recommend that the iron capsule be taken on an empty stomach and certainly not with milk!
If not for the kratom, I would move to Oregon where assisted suicide is legal! (Partially kidding--not sure how much!)
Return to this site often; the loving souls who write here are a great source of strength, courage, and solace.
NOTE WELL: Beginners should start with half the dose described above. I’ve settled with the 8-gram dose after nearly a year of efficacious use.
Dodah man I live in New York and naturally have come across the various weeds although never ever tried as do not fancy it and the smells are offensive,I did manage to acquire for a dear friend some she had terminal cancer as I drove I had nightmarish visions of being overtaken by posses of police with motor cycle out riders.when mission was accomplished I never thought again about it.Imagine my surprise when during a visit to my cardiologist he said had I ever thought outside the box about marijuana?I nearly fell off my chair ,at my advanced age no less.I still have not ventured down that pathway but do hope you continue to get relief isn't,t there a shorter cut instead of what seems an arduous process for the desired result?I see New York are making concerted efforts to legalise the substance although it can be obtained for medical reasons I suspect there are very narrow definitions regarding that .
Hi. I’m just replying to people that are still struggling with rls bc my son has been cured. 10 days of suppositories and miralex (ongoing). (A doctor said to try this)
No idea why this worked but it did and it’s a better option to try that drugs. Good luck!
Kratom. My SEVERE rls is gone!
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